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Resources for Traumatic Brain Injury Survivors and Caregivers

Lisa Rosen and Elizabeth Wojciechowski

BACKGROUND

Need for Transitional Support

Many brain injury survivors and their families will require significant support as they transition from hospital or rehabilitation to home and community. While many will need support throughout their lifetimes, the type and amount of support needed is likely to change over time [1,2]. Because the residual effects of each brain injury will have a unique impact on the existing family unit, individualized transitional planning is important for successful community reintegration [3], an important aspect of quality of life [1]. As transitional plans are developed, it is useful to consider the general domains of living: (a) activities of daily living, (b) vocational/school reentry, and (c) leisure/social/wellness. Consideration also needs to be given to available community resources. Although it is widely acknowledged that many traumatic brain injury (TBI) survivors and their families need transitional support services following hospitalization, many do not receive services due to the lack of availability (or because barriers exist to accessing those services) [4,5]. Electronic databases with resources for patients and caregivers can help to fill the gap when services cannot be directly accessed.

Barriers to Resource Access

Lack of Knowledgeable Providers

When developing a community support network for the survivor and the family, it is important to find reputable, experienced, and knowledgeable service providers. Most community programs simply do not employ staff educated in brain injury. Medical professionals, psychologists, and even rehabilitation professionals may not have had experience with the TBI population or their needs. However, knowledgeable staff can be found, and an effort should be made to identify them. For example, many large park districts have programming for those with varying abilities; community mental health programs may have individuals who have worked with the TBI population, and some counties may have special community case management services available. In addition, advocacy groups often have experience working with TBI survivors and their families.

Financial/Funding Considerations

TBI affects not just the financial status of the survivor, but of the entire family [6,7]. Lost wages are a consideration for the survivor, but may affect the spouse or parent as well. Parents or spouses may become primary caregivers of the TBI survivors, impacting their employment status and the family’s financial well-being. The cost to provide in-home care, outpatient rehabilitation, day care, and transportation services can be quite high [8]. Equipment and medications can be costly as well. Since these or other services may be required over a lifetime, the costs can become significant. Historically, community services for TBI survivors and their families have not been well funded in the public sector. However, financial support opportunities for eligible families are available. See, for example, www.traumaticbraininjury.com/funding-resources/

Limited Local or Regional Resource Availability

The specific state or area in which the survivor/family reside may hinder service access. Some rural areas do not have the resources of larger urban centers. Also, states vary widely in the financial support made available to survivors/families or to the providers who offer services to persons with traumatic brain injuries. However, the development of telemedicine and web-based education programs can fill a gap in providing access to resources for persons in rural areas [9,10].

RESOURCES

Although most resources for the TBI survivor and the family are accessed at a local level, they are usually first identified through national information sources. This resource list will therefore focus on general categories of support needs and national resources, which can, in turn, lead to local resource information.

TBI Education

The following organizations and centers provide Web-based access to TBI educational materials of value to both consumers and professionals:

Medical

Ongoing medical management is important for most brain injury survivors. Physicians who specialize in TBI may be identified through selected professional organizations:

Neuropsychological/Psychological

Neuropsychological assessments should be conducted and interpreted by those who have experience working with individuals with TBI. Neuropsychologists can significantly enhance understanding of the effects of the brain injury. In addition, psychologists who understand the effects of sudden loss or change on family systems can also be helpful to survivors and families trying to cope with the effects of brain injury. See:

Neurorehabilitation

The ongoing rehabilitation needs of each survivor will vary according to the residual effects of the brain injury. Home health services, long term care/skilled nursing/subacute programs, day treatment, and outpatient programs are the usual categories of programs that may be recommended for a survivor. One means of locating services available in your area is through your state Brain Injury Association chapter.

Caregiver Support/Resources

Caregiver burden and the impact that caregivers can have on the recovery process for persons with TBIs is widely discussed in the literature [11,12]. The burden experienced by a caregiver of a TBI survivor—generally a family member—may be particularly difficult given the lengthy recovery process and the altered abilities and personality of the survivor. Often, the caregivers’ wellness is sacrificed when their needs for support are not understood and prioritized. Wellness, respite, and spiritual and social networking can be important components of a caregiver support plan. Support groups for the caregiver, as well as for the survivor, can be found throughout most states and are often important sources of caregiver wellness information. Your state BIAA chapter/affiliate is one helpful resource for locating these groups. The following are also useful caregiver resources:

Related posts:

Selected Somatic Disorders Associated With Mild Traumatic Brain Injury: Fatigue, Dizziness and Balance Impairment, and Whiplash Injury Heterotopic Ossification The Neurointensive Care Unit: Intracranial Pressure and Cerebral Oxygenation Posttraumatic Headache Posttraumatic Seizures Recognizing Manifestations of Posttraumatic Stress Disorder in Patients With Traumatic Brain Injury

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